ScreenEQUAL: Informed Cervical Screening Participation for People with Intellectual Disability

The resource for people with intellectual disability is multimodal, incorporating Easy Read written information, social stories and videos to support accessibility for people with high support needs (hereon referred to as the ‘intervention’). The intervention builds on the Family Planning Australia ‘Just Checking’ resource series which supports cancer screening for people with intellectual disability, their families and support people. The intervention has been reviewed and approved by the University of Sydney for the purpose of assessing cervical screening informed decision-making for people with intellectual disability, which is the primary outcome of this clinical research trial. During the initial consent process, people with intellectual disability will be invited to meet with the expert disability researchers, with support from the research team, either in-person at a location of their choice (disability service, UNSW Sydney, the University of Sydney, disability service or grassroots organisations known to people with intellectual disability) or online using Zoom or Teams, depending on the participants preference. During initial consent, the research team will explain the project to potentially eligible participants using a range of tailored approaches (e.g. website, online newsletters, hard copies of participant information sheet and consent form (PISCF)) and answer any questions. Participants who are interested in taking part will then be invited to provide their consent either in writing or via audio-recording. This approach aims to make the trial aims are easily understood and to facilitate voluntary informed consent, including participants’ choice for written and/or verbal consent. At the end of the initial consent process, the research team will invite participants (verbally) to join one of 5 or 6 accessible workshops of approximately 10 people with intellectual disability and 2 to 3 trained support people, facilitated by members of the research team. The verbal invitation will be accompanied with Easy Read information to support participants understanding about the time and location of the intervention workshop and to provide the contact details (telephone number and email address) of the disability researchers and workshop facilitators. The research team will invite consenting participants to answer a brief set of accessible questions delivered using an interview-style-format, eliminating the need for written text. Accessible questions will include general demographic questions (e.g. their year of birth, residential postcode, gender and cultural background, including whether they identify as Aboriginal and/or Torres-Strait Islander, living status and educational history) and closed and open-ended accessible questions to assess informed decision-making about cervical screening (primary outcome) across the domains of knowledge, attitudes and intention to screen. The accessible questions will include participant’s understanding about the role of screening in preventing cervical cancer, screening options, including the choice of a self-collected test, and the likely consequences of screening including recommended follow-up after an abnormal test result. Response options include 'Yes', 'No' and 'I don't know', which are accompanied by images of a thumbs up (indicating a 'yes' response), thumbs down (indicating a 'no response') and a neutral thumb ('indicating 'I don't know'). The same response scale and visual cues will be used to assess participants’ attitudes towards screening. For example, "For me, having a cervical screening test is a good thing" ('Yes', 'No', 'I don't know'). The accessible informed decision-making tool for people with intellectual disability has been reviewed and approved by the University of Sydney HREC. It is important to note that written surveys are not accessible for many people with intellectual disability. To address this challenge and given the lack of an existing validated tool to measure informed decision-making by people with intellectual disability about cervical screening, the research team, led by the chief investigator with intellectual disability and health literacy experts at the Health Literacy Lab at the University of Sydney, modified an existing tool. The accessible intervention workshops will be delivered at disability services and grassroots organisations known to people with intellectual disability in the community and take up to 4-hours. At the start of the intervention workshop, the expert disability researchers will introduce the research team, including the trained facilitators, describe what will happen during the workshop, answer any questions and invite participant’s continuous consent, including consent to audio-record the intervention workshop (for data collection and analysis purposes only). The trained support people will then use the intervention with participants in a way that simulates what would happen in a community setting. At the end of the workshop, participants with intellectual disability will be supported to repeat the primary outcome questions to assess changes in informed decision-making. At the end of the workshop, a sub-set of participants with intellectual disability (n ˜ 20 or until saturation is reached) will be invited to participate in post-intervention qualitative interviews, with the option of additional body-mapping, to provide further insights into perceptions of the resources and to support the interpretation of the study outcomes. Body-mapping involves the participant (or, if preferred, an expert disability researcher) tracing around their body to create a life-sized outline and being invited to fill their body outline by drawing or attaching pictures, writing words, or using colours, associated with their own experiences with cervical screening.